Impact of attention-deficit/hyperactivity disorder on the patient and family: results from a European survey

Child and Adolescent Psychiatry and Mental Health BioMed Central Research Open Access Impact of attention-deficit/hyperactivity disorder on the patient and family: results from a European survey David Coghill*1, Cesar Soutullo2, Carlos d'Aubuisson3, Ulrich Preuss4, Trygve Lindback5, Maria Silverberg6 and Jan Buitelaar7 Address: 1Centre for Child Health, 19 Dudhope terrace, Dundee, Scotland, DD3 6HH, UK, 2Child and Adolescent Psychiatry Unit, Clínica Universitaria, University of Navarra, Pio XII, 36. 31080-Pamplona, Spain, 3Mühlenstrasse 61, 49324 Melle, Germany, 4Universitätsklinik für Kinder-undJugendpsychiatrie Psychotherapie Bern, Effingerstrasse 12, CH-3011 Bern, Switzerland, 5Ostadalsveien 58, 0753 Oslo, Norway, 6överläkare, tf enhetschef, BUP Signal, Observatoriegatan 18, 113 29 Stockholm, Sweden and 7UMC St. Radboud (966), Department of Psychiatry, Nijmegen, the Netherlands Email: David Coghill* - ; Cesar Soutullo - ; Carlos d'Aubuisson - ; Ulrich Preuss - ; Trygve Lindback - ; Maria Silverberg - ; Jan Buitelaar - * Corresponding author Published: 28 October 2008 Child and Adolescent Psychiatry and Mental Health 2008, 2:31 doi:10.1186/1753-2000-2-31 Received: 23 June 2008 Accepted: 28 October 2008 This article is available from: http://www.capmh.com/content/2/1/31 © 2008 Coghill et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Abstract Background: Children with attention-deficit/hyperactivity disorder (ADHD) often experience problems with education, interaction with others and emotional disturbances. Families of ADHD children also suffer a significant burden, in terms of strain on relationships and reduced work productivity. This parent survey assessed daily life for children with ADHD and their families. Method: This pan-European survey involved the completion of an on-line questionnaire by parents of children (6–18 years) with ADHD (ADHD sample) and without ADHD (normative population sample). Parents were questioned about the impact of their child's ADHD on everyday activities, general behaviour and family relationships. Results: The ADHD sample comprised 910 parents and the normative population sample 995 parents. 62% of ADHD children were not currently receiving medication; 15% were receiving 6–8 hour stimulant medication and 23% 12-hour stimulant medication. Compared with the normative population sample, parents reported that ADHD children consistently displayed more demanding, noisy, disruptive, disorganised and impulsive behaviour. Significantly more parents reported that ADHD children experienced challenges throughout the day, from morning until bedtime, compared with the normative population sample. Parents reported that children with ADHD receiving 12-hour stimulant medication experienced fewer challenges during early afternoon and late afternoon/early evening than children receiving 6–8 hour stimulant medication; by late evening and bedtime however, this difference was not apparent. ADHD was reported to impact most significantly on activities such as homework, family routines and playing with other children. All relationships between ADHD children and others were also negatively affected, especially those between parent and child (72% of respondents). Parents reported that more children with ADHD experienced a personal injury in the preceding 12 months, including those requiring the attention of healthcare professionals. Although 68% of parents were satisfied with their child's current treatment, 35–40% stated that their child's ADHD symptoms needed to be more effectively treated during the afternoon and evening. Conclusion: This parent survey highlights the breadth of problems experienced by ADHD children and the impact throughout the day on both activities and relationships. Therefore, there is a need for treatment approaches that take into account the 24hour impact of the disorder and include all-day coverage with effective medication. Page 1 of 15 (page number not for citation purposes) Child and Adolescent Psychiatry and Mental Health 2008, 2:31 Background Attention-deficit/hyperactivity disorder (ADHD), which is estimated to affect 4–12% of school-aged children, is one of the most common neurobehavioural disorders of childhood [1]. Although little doubt remains that ADHD affects both genders, the literature on ADHD in females remains limited [2]. ADHD is characterised by developmentally inappropriate levels of inattention, hyperactivity and impulsivity, which often gives rise to serious impairments in academic performance and social adaptive and behavioural functioning, both inside and outside the home [3,4]. Although ADHD symptoms have been shown to change with age (hyperactive and impulsive behaviour decreases, while inattention increasingly becomes predominant) [5], studies following children with ADHD into adolescence and early adulthood indicate that ADHD frequently persists and is associated with significant psychopathology, school and occupational failure, family and peer difficulties, emotional problems and low self-esteem [6-10]. ADHD is associated with an increased risk for accidents among children [11,12]. Compared to children without ADHD, children with ADHD were more likely to be injured as pedestrians (27.6% vs 18.3%, respectively) or bicyclists (17.1% vs 13.8%; respectively) and to have selfinflicted injuries (1.3% vs 0.1%; respectively) [11]. They were also more likely to have sustained injuries to multiple body regions (57.1% vs 43%; respectively), to have sustained head injuries (53% vs 41%; respectively) and to have been severely injured (13.5% vs 5.4%; respectively) [11]. During the past decade, epidemiological studies have also documented high rates of learning disorders and cormorbid psychiatric difficulties amongst children with ADHD, most commonly, oppositional defiant disorder and conduct and mood and anxiety disorders [13-15]. As they reach adolescence, children with ADHD are also at an increased risk for cigarette smoking and substance abuse [16-18]. Furthermore, a comparison between an ADHD sample of 239 consecutively referred adults with a clinical diagnosis of childhood-onset and persistent ADHD, and 268 non-ADHD adults, reported that subjects with ADHD were significantly more likely to make the transition from an alcohol-use disorder to a drug-use disorder (hazard ratio = 3.8) and were significantly more likely to continue to abuse substances following a period of dependence (hazard ratio = 4.9) [16]. Whilst debilitating for the child, ADHD has also been shown to adversely impact on parents' quality of life, placing a substantial burden on the family as a whole. Indeed, families of children with ADHD have been consistently shown to experience mo (...truncated)